Plan ahead for your hospital stay
Transplant support group
Coming in for your transplant surgery
The transplant surgery
Post-operative care
Leaving the hospital

Plan ahead for your hospital stay
When you get the call that it's time to come in for your transplant, you want to be sure you are ready. Be sure to plan ahead of time. Make a list of items to bring with you to the hospital. You'll want to include:

• Comfortable clothes (jogging suits, sleepwear) that have soft, elastic waistbands or no waistbands
• Your transplant handbook
• Blood pressure cuff and thermometer if you already have one so that we can calibrate it to ensure accuracy
• A list of your current medicines (bring this to every clinic or hospital visit)

Plan for your housing and transportation

Before your transplant: If a donor organ becomes available, you must arrive within two to three hours of our phone call. If you live more than three hours from the hospital, we will help you arrange air travel. Discuss this with your coordinator.

After transplant: You need to stay in the metro area for about four to six weeks after leaving the hospital. You will come back to the clinic often during this time. If you live outside of the Twin Cities area, you may need to find housing in the area. Your social worker can help you with housing issues, fundraising, etc. If your family and friends will stay in the Twin Cities while you are in the hospital, they will also need a place to sleep.

You can also get more information in our Web site about housing by clicking on Where will you stay? Or call our Accommodations Office at 612-273-3695 or 1-800-328-5576.

Arrange for support and care
You must have someone with you at the time of transplant and for up to three months after discharge. When you leave the hospital, someone must be with you 24 hours a day. This support person(s) will help with meals, medicines, rides to the clinic and other needs. Family and friends can take turns providing this support. It’s important to have one main person to organize your care and attend casses with you before your discharge. Family medical leave or other arrangements for time off should be made before your transplant.

Plan for your children and pets
Most people are in the hospital for one to two weeks. Some people stay longer. If you have children, now is the time to plan for their care while you are in the hospital. Get them used to another home if they will be staying there. If you have pets, you will need to arrange for their care as well. Your children may visit you in the hospital. An adult must stay with them at all times. They cannot visit if they have any illness that might spread to others.

Prepare your family and friends
Please tell visitors that plants and flowers (cut or dried) are not allowed in your room. Your medicines will lower your immune system, and plants and flowers may increase your risk for infection. When you return home, this will not be a problem.

Remind your loved ones that they need to take care of themselves in order to be the best support for you. They must get plenty of sleep, eat regular meals and limit caffeine and tobacco.

Because you will tire easily for the first three to six months after your transplant, visits and social events with family and friends may have to be limited.

Prepare yourself emotionally
Waiting for a transplant is stressful. Patients have told us that being in the hospital after the transplant is also difficult. Please think of how you and your family have dealt with great stress in the past. Think about what helped you through these periods—and what you would like to do differently this time.

Chaplaincy Services are available upon your request. You may also wish for visits from you home minister.

Transplant Support Group
This weekly meeting is a chance for patients and families to share experiences and help each other cope with common concerns. It also provides information on topics of interest to patients and their families. This group is lead by the transplant social worker, and attended by those waiting for transplant, as well as those who have been transplanted.

You and your family may attend our transplant support group at any time. The support group meets on Thursdays from noon to 1:00 p.m. in the Board Room on the eighth floor of the main hospital (right outside of the Bridges cafeteria).

If you cannot attend this support group, your social worker may help you find a support group in your area.

Coming in for your transplant surgery
When an organ becomes available, a transplant coordinator will call you. Calls like this often come at night, so be sure to answer your phone.

The coordinator review your current health status, and give you instructions for coming to the hospital. Please be sure to:

• Have your coordinator's name and the hospital’s phone number.
• Ask if you should stop any of your medicines. If you take insulin for diabetes, ask what to do about your insulin.
• Stop all foods and liquids. If you have taken insulin, make sure you mention this to the nurse coordinator.
• Remember to bring the items you'll need while in the hospital (transplant handbook, etc.).

Once you arrive at the hospital, please stop at the Admissions Department. They will know you are coming and will direct you to the Transplant Unit. After you are admitted, we will do blood tests and prepare you for surgery.

Your family can stay with you until it is time to go to the operating room. We will then direct them to the waiting area on the third floor. After your surgery, the doctors will meet them there.

The transplant surgery
The actual heart transplant take about 6-8 hours. A nurse coordinator will be with you before and during your surgery. He or she will give you emotional support and keep your family informed.

Post-operative care
After surgery, you will be taken to the Intensive Care Unit (ICU). You will stay there until you are stable and can breathe on your own. Visiting hours are limited. Please ask your nurse for more information.

You may be slow to wake up after surgery. We will give you medicine to control pain and help you relax. You will find that several tubes were placed in your body during surgery. 

• Endotracheal (breathing) tube: You will have a tube in your throat to help you breathe. It may be uncomfortable, but we will give you medicine to help you relax. You cannot talk while the tube is in your mouth. The doctors will remove the tube when your lungs are working well and you are awake enough to breathe on your own. Some people do not even remember having this tube in place, because of the medicines given for relaxation
• Chest tubes: Chest tubes will be placed to help drain fluid from your chest. You will have the tubes for a few days.
• Foley catheter (urinary tube): This tube drains the urine from your bladder. It is important to monitor your urine output and kidney function carefully.
• Intravenous (IV) lines: You will have many IV lines, including a "central line." This tube is placed in a large vein in your neck. We use it to give medicines, fluids and blood transfusions. It is also used to take blood samples and check fluid pressures in the body.
• Nasogastric (NG) tube: This helps keep your stomach empty so you don’t get nauseated (feel sick to your stomach). During surgery, the tube is placed in the nose and goes down into your stomach. It will stay in place until you can pass gas.

The Step-down Unit
Once you are stable and your breathing tube has been removed, we will move you to the Step-down Unit. You will be in a private room.

We will draw blood for tests daily. You will also have X-rays. Visits from your surgeons and cardiology teams will also occur daily.

You will learn about your medicines and how to take care of yourself. You and your support person(s) will be required to attend transplant classes. Your nurse will schedule these for you. Please bring the transplant handbook you received during your evaluation. This provides general information and a place to write your lab results. Your nurse will work closely with you as you learn. By the time you go home you will know how to take your medicines, record your lab values, check your blood pressure and more. Once you go home, you will need to keep track of your lab values, blood pressures, daily weights, and blood sugars. Please bring your lab book to all clinic visits.

Leaving the hospital
You can expect to stay in the hospital for seven to 14 days after surgery. Some people stay longer, depending on their condition before surgery. Your first biopsy to check for rejection will be done before discharge. This procedure is the same as a right heart catheterization, and a few heart cells will be analyzed for evidence of rejection. There should be minimal discomfort from this procedure, though you may feel some pressure when the catheter is inserted.

After leaving the hospital, you will need to stay in the Twin Cities area for up to three months. During this time, you will come to the clinic often for exams, biopsies, and labs. You will need someone to drive you to your clinic visits. You will also need family or friends who can help with complex medical care at home when you go home. Bring your medicine card, lab book, and your support person to each clinic visit.

If you were very sick before your transplant, you may be discharged to a rehab (rehabilitation) facility for a short time to help you gain physical strength.

Depending on your care needs, your follow-up visits may look something like this:

• The first month after surgery: You will come to the clinic weekly.
• Two to three months after surgery: You will come to the clinic every other week.
• Three to six months after surgery: You will come to the clinic monthly
• Six to twelve months after surgery: You will come to the clinic every other month.
• Annual visit: A series of additional tests will be scheduled at your appointment one year after your transplant, and every year thereafter.